What Should Be Said or Silenced: Opinions of Necessary and Inappropriate End-of-life Communication Between the Living and the Dying

Abstract

End-of-life (EOL) communication experiences between the Dying and the Living in various roles (e.g., family, clergy, healthcare providers, and hospice workers) have often been studied; however, no research has examined what people believe are necessary as well as inappropriate EOL conversation topics with the Dying. Extant studies in family communication have identified common EOL topics in retrospective accounts of previous conversations with the Dying, but no research has asked individuals with and without such experiences what they think should and should not be talked about during EOL interactions. The current study addressed this gap. Participants (N = 145) ages 18 through 88 years-old completed a qualitative online questionnaire comprised primarily of open-ended questions. Reported necessary topics (N = 558) included “reflections on life and living”; “preparation of the Dying’s transition and impending death”, and “planning for the future”. Participants reported that certain topics should be talked about (N = 564) because, for example, they “bring comfort to the Dying”, “honor and respect the wants and needs of the Dying”, and create a sense of closure. Reported topics that the Living should not discuss with the Dying include those that are “negative, painful, and upsetting matters”, “address money, possessions, and inheritances”, and are about “the Living’s needs, problems, wishes, and beliefs.” The primary reasons for avoiding such topics included that by not talking about them the Living can “bring comfort to the Dying”, “avoid futile or insignificant conversations”, and those topics recognized as “selfish, and mean-spirited, in poor taste, insensitive, rude, hurtful, or greedy.” These findings increase awareness of what people believe to be necessary conversation content and existing barriers that may prevent competent interpersonal communication.